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AIBU?

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Original poster

To have children and pass down a genetic disorder?

182 replies

killagorilla · 14/08/2012 20:39

I have Factor V Leiden, it's a blood clotting disorder and is passed down from parent to child. I have it as does my siblings and every family member on my maternal grandfather's side.
It is quite a serious disorder and I have had one blood clot in my lung, all my family are on a low dosage of warfarin/heparin/aspirin to minimise the chances of blood clots.
I have 2 kids and they both have it as well. I was with a friend from university today and her kids and she was asking about it. When she found out that it is passed down from parent to child she got a bit shitty with me.
She said that she would never have kids knowing that they would have it and it could mean injecting yourself regularly and not being able to live a normal life.

I've been thinking about it and now I feel a bit Sad because I look at my kids and can't imagine life without them. But maybe I was selfish to have children knowing they would have something that has caused me so many health problems.

What do you guys think?

OP posts:
Noqontrol · 14/08/2012 21:24

I dont think your friend is much of a friend op.
My dh has a genetic disorder that has a 50 per cent chance of being passed down to our children. We thought long and hard about this, but figured that although the genetic disorder is a reasonably serious one, there is still no reason why our children wouldn't have happy and fulfilled lives, even if they did inherit it. On that basis we went ahead Grin
If a friend said that to me I don't think I would want them as a friend anymore.

Chocamochalatte · 14/08/2012 21:26

Kills my younger sister also got a DVT from a short plane journey, luckily she was aware of symptoms to look out for and called me straight away. I took her to A&E who took a lot of pursuaving and strong words to check it out properly Angry

The 'problem' I had was that it took four different doctors four days to finally figure out it was a DVT (!) then I got a second clot within a month whilst still on warfarin so now I'm on it or life, my leg is a mess with varicose veins ie I can't wear skirts / shorts (I'm 35) which is sometimes a pain lol! Totally the doctors fault though, if they'd caught it properly the first time (which incidently he admitted to knowing afterwards) then my leg wouldn't be half as bad!

CouthyMow · 14/08/2012 21:30

I have genetic Hypermobility Syndrome from one side of my family, and a genetically 'influenced' form of epilepsy (in other words, they know it is genetic given the pattern of incidence in females in our family for at least 5 generations, but haven't yet found the gene/s responsible).

I never for a moment considered NOT having children. Though I may have done had the epilepsy been found to have a genetic link BEFORE I had my DD. but only considered, I probably would still have gone ahead.

The Hypermobility affects 50% of each generation, roughly, so the odds were that it was just as likely for them not to have it IYSWIM. 3/4 of my DC's DO have it, but only one is severely affected.

The epilepsy wasn't investigated until my own diagnosis, AFTER 3 of my DC's were born. OK I then made the choice to continue with a further (accidental but much loved) pregnancy, but thankfully it was a boy. (No males affected by it)

DD HAS got epilepsy, but it is a lot milder than my own. Hopefully by the time she is 17, she will still have been seizure free for long enough to drive. Which is unusual in my family.

spoonsspoonsspoons · 14/08/2012 21:39

Yanbu

There are certain genetic disorders i'd have pre-implantation screening for but that's a very personal decision and i wouldn't judge anyone for making a different decision

Evasmum12 · 14/08/2012 21:41

What a horrible thing for your friend to say! You should not feel guilty for having children!!

My situation is different - my dd was extremely premature, and has had a rough time, we spend a lot of time in hospitals/Drs/ waiting in for nurses. She needs a gastrostomy as a result of illnesses linked to her prematurity. I decided early on that I would never have another child. I don't think I could risk going through this again, and putting another baby through what my dd has been through. But that is my own personal choice and one that I get judged for too.

HipHopSkipJumpomous · 14/08/2012 21:52

What a nasty thing for a friend to say.

I guess as someone who has inherited the gene/disorder herself, you are well placed to make the decision re children.

I hate this idea that "perfect" bodies and perfect lives are somehow worth more or are more valued than flawed bodies and flawed lives.

bumperella · 14/08/2012 22:15

I have a genetic condition - a dominant gene, so DC would have 50/50 chance of inheriting it from me. Some people with the disorder can be very badly effected, some people barely affected at all. it doesn't hugely impact quality of life for most sufferers - very seldom do people have chronic pain etc.

For ages I was sure that I wouldn't have children because of the risk of passing it on. But then someone told me "better to have crap genes than no genes at all" - i.e. better a shortened life than no life at all; after all everyone dies sometime.

bumperella · 14/08/2012 22:15

Sorry -meant to add,
This freind of yours is either too dozy to realise how you'd feel from her comments, or is an out-and-out bitch.

Maryz · 14/08/2012 22:25

This reply has been deleted

Message withdrawn at poster's request.

ReindeerBollocks · 14/08/2012 22:26

I'm going against the grain.

YABU.

You are choosing to put them thorough suffering. Have you heard of PGD? Unless you are of religious preference that disagrees with PGD, I don't understand why you didn't consider such a route. You knew there was a risk and took it, the fact remains is that your child now has to suffer with a serious medical condition. I'm not going to say that your right to have child means that a serious medical condition should be overlooked. And in my eyes that makes you unreasonable, and a bit selfish IMO.

Maryz · 14/08/2012 22:31

This reply has been deleted

Message withdrawn at poster's request.

GhostShip · 14/08/2012 22:33

Tell your 'friend' to fuck off. It's all fine and dandy her saying that, without being in the position.

Killa you've done nothing wrong. Dont let this upset you

ReindeerBollocks · 14/08/2012 22:35

Her 18yo cousin died, and OP has said she had a serious blood clot on her lung (alongside other clots).

Sounds very serious with a fair bit of suffering.

I completely understand not genetically screening every person who procreates but knowing you have a high chance of passing on such a condition? sorry it doesn't sit right with me.

GhostShip · 14/08/2012 22:37

Well it wouldn't would it because I'm guessing you don't have a genetic disorder?

Trills · 14/08/2012 22:38

PGD only works if the gene that causes a disorder is known - from the description it doesn't sound as if it would apply in this case.

Chocamochalatte · 14/08/2012 22:38

Reindeer, causing them to suffer? How? You really need to do your research. The chances are Factor V Leiden will never effect them.

Chocamochalatte · 14/08/2012 22:39

Reindeer just for you www.fvleiden.org/ judge away once you've read the facts.

Maryz · 14/08/2012 22:41

This reply has been deleted

Message withdrawn at poster's request.

mumnosGOLDisbest · 14/08/2012 22:44

i dont know anything about your disorder but if you are happy and living a full life with your disorder under cintrol then theres no reason for your dcs to have anything but happy lives too. thank goodness your parents chose not to let this stop them having dcs :)

it would be different if you knew your disorder would cause a lot of suffering as no parent wants that for their dcs.

Sarraburd · 14/08/2012 22:46

Have been thInking about this myself alot recently as my DS2 has just been diagnosed with autism (and is v likely DH's father and his bro are I undiagnosed cases). The first thing the health team asked us was whether we planned to have any other kids, as the chances are one in five they'd be autistic too.

As it happens, although I'd love more, DH is not at all keen so we won't. But if this had been our first DC, maybe we wouldn't have had our other two beautiful DC. They v much implied that we shouldn't have more.

And does that mean my DC's then should think twice about having kids??

And who's to say anyway that my autistic child shouldn't have a valid life in his own way? What is a valid life?

ReindeerBollocks · 14/08/2012 22:46

choca I made assumptions that her children would suffer based on the fact that OP states her family all suffer in one way or another with this condition. I think she even stated that at any one time her family would be in hospital with a blood clot. Meaning that whatever strain she must carry, it is clearly very problematic and therefore it is likely that her DCs might suffer too.

If it is the case that her DC's won't suffer then yes, it would be less of an issue for me.

maryz I am not saying that we can prepare for any scenario - however this was something OP was aware of.

trills I could be wrong, but I was under the impression that OP knew of this condition before she had children. Meaning that PGD may have been an option seen as though it was a known condition.
Had she not known before pregnancy, again, I wouldn't have an issue.

saintmerryweather · 14/08/2012 22:47

ive got an extremely rare genetic condition (a form of hypertrichosis) which although doesnt cause any physical pain, its the one thing i hate most about myself and i woukd get rid of it in a heartbeat. so although i only have a 50-50 chance of passing it down to my children i am considering not having any because of the effect it has had on my life and how i was bullied for it

Sarraburd · 14/08/2012 22:48

Oh and YANBU

YoullLaughAboutItOneDay · 14/08/2012 22:50

I haven't had a chance to read every response on this, but I've read most of them.

How sad that your friend made you feel so awful. I don't know anything about your condition I am afraid, but the idea that you shouldn't reproduce unless you are genetically 'pure' is so repulsive I can't even begin to process it.

FunnysInLaJardin · 14/08/2012 22:52

I think your 'friend' should mind her own business. It is your decision alone whether to have children. My lovely friend had a child die at 20 weeks due to a genetic disorder and then she went on, with a 2/4 chance of it happening again to have her DD. Her DD was fine. It wouldn't occur to me to judge my friend. She did what was right for her.